Flipping the HD switch

Yesterday started out like any other day, with the potential of being a day filled with hope, productivity and love. But for me, with HD, all it takes is for something to flip a switch, and everything is overtaken by the worst feelings of despair and foreboding.

The smallest negative thought yesterday morning flipped my switch, stole my day of promise, and rammed my will into what felt like a barbed, cramped metal container. I spent all day trying to break out, to outsmart, to out-wait the sinister captor.

No sleep came to provide respite. No arms were available with the exclusive purpose of holding me. The only voice that I could hear was my own, and the best advice I could give myself was to wait it out.

It would relent at some point if I just waited it out.

Towards the end of the seemingly endless day, I sat on the same couch where the switch had flipped twelve hours before.

This time I was medicated for the evening and was prepared to distract myself with television images until I was sedated enough to go to sleep. An end-of-a-bad day  game that had worked plenty of times before,  but failed this time.

Instead, I acted impulsively and inappropriately then lashed out at my family. I stomped upstairs and flung myself into bed. My husband was at my side shortly, and I acted out some more.

Then I felt so ashamed about everything. I had spent all day trying to fight my way out of the metal container, and was only then hanging my head out to draw in desperate breaths of the reality I had so longed for.

But in my quest for it, I had tainted it.

Today I am tired.

My brain is like a floor filled with mousetraps and I’m afraid to take a step.


6 thoughts on “Flipping the HD switch

  1. It’s one thing to be tested physically by a progressive dis-ease …… And yet another to be tested emotionally. Your written words are so real to me …… And provide a window into HD that I could not otherwise ever understand or find out. I’m with you sister sister …. Heart and soul ….. And always on your side.luv DK

    Liked by 1 person

  2. Try and keep positive! With all the research, trials and awareness out there can only ever move forward, it won’t go back!
    I remain positive that very soon now this will all be a very bad memory!
    A friend of mine with MS was told 20 years ago, she would be very disabled in later life and her movements and entire body would get progressively worse. She has spent those past years depressed, scared and neglecting herself. 18 months ago, she was told she would be cured! 100% success rate! – she had the treatment n hospital 18 months ago and has never looked back! The disease has halted and how happy, ecstatic and thankful she is every day. (She just wishes she had looked after her teeth!)
    Try try and try to keep looking towards the fact that there will be a cure and treatment soon and look after yourself, keep strong and seek the support of your family and friends – it’s just as hard for us too, but share your fears and talk! Keep looking at the research for uplifting feelings. Oh and look after your teeth! X


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